27 Apr 2018
Author
Louise
Title

The SHINE Approach to CFS/ME FM Treatment

Body

Understanding The SHINE Approach to CFS/FM Treatment

Comments

Ten weeks!!!! who's he kidding?

 

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

i'm afraid i am a bit 'underwhelmed' by the general hotchpotch.  i always generally slept well (except when first ill or in relapse), my hormones are fine etc etc.  i never (of course) had any infections addressed but that is not such a simple thing as implied, as even the most dedicated CAPpers here have found. 

 

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

hmmmm, if it was that easy; we would all be well in 10 weeks or less.  I am sure he means well.  I don't believe Dr. T is a Wheldon protocol convert at the moment.  I receive his newsletters & I suspect, like other docs, he is in it for the money he makes with book sales.  I could be wrong, that is for sure.

It is extremely hard to balance all these factors to wellness.  If we could heal up in 10 weeks, we would be super human, get me some krytonite, kind of super!!

7 months into protocol & about to start my 6th baby pulse for 5 days, I have found, patience if definitely a virtue & challenging (type A here which is what got me in this mess in the first place)

All things in good time!

Expect the unexpected!

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

SHINE - My personal belief is that it goes more like:

Infection leads to nutritional deficiences and hormonal imbalances which lead to sleep disturbances which all results in CFS. You have to start with the infections first then work on the others. I've been trying for years to get better from the nutritional/hormonal/sleep/exercise end and I've gotten nowhere. SHINE probably works mainly because of the treatment of infections and addressing the other issues just helps accelerate recovery. So it still comes down to getting the Cpn out first.

I'm also skeptical of taking glandular supplements. I don't think consuming a pig's adrenal tissue, for example, will fix my adrenal glands any more than eating liver and onions for dinner will get rid of cirrhosis of the liver.

 

asthma, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

Sunni, I am here because of seeking help through the FFC system.  It is not perfect, however I was identified with CPn and here I am on the Wheldon Combination Antibiotic Protocol for my stealth bacterial pathogens.  Also if I were a lot younge I would be more "skeptical" about glandular supplements.  However I found DHEA and Pregnonelone through reading about a year before my CPn piece of the puzzle and I personally can say that these low cost, available OTC neutraceuticals were very helpful for a number of major complaints, to list them would be a bit too personal for me just now.  Of course energy was one and I was able to rise more easily in the morning even if I really did not shine.

I used to be a total whole "rice" cookie so to speak.  I now have the philosophy of many things in moderation can be supportive and/or healing in their own unique way.   Pig's or cows adrenal tissue will not fix an adrenal gland how ever if you are truely deficient it will substitute in some fashion.

If anything, the one thing that I have learned in my experience of declining vitality is you do what you can to feel better and if you are fortunate you find some "stuff" that can help.   Doxy may be high powered stuff that In my previous mode I well could have passed judgement on.

Thanks for listening,

 Louise

CFS/ME.CPn positive.Bb positive.

Started 6/24/07WheldonCAP.Doxy, Roxi, Tini pulse #4 currently in progress.

Cholestyramine 1 packet at Bedtime  for Porphoria and die-off symptoms of Fatigue, Brainfog, mood.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Teitelbaum has been treating CFS/FM for a long time, and evolved his multi-system protocol, and was willing to test it scientifically, when even speaking of these things (hormones, infections especially) in CFS/FM were frowned upon by the medical establishment. Or when most of the medical establishment did not even believe in the medical reality of the conditions, let alone willing to stretch beyond palliatives to treat them. He has actually helped people who had no one taking them seriously, and a lot of the approaches (like FFC) are influenced much by his work, even prior to his association with them. So he's earned the place to push his protocol to me at least. Think of it, his protocol has been accepted as a legitimate medical strategy to treat CFS, albeit not widely yet, because of his study being published.

However he, like most doc's treating infections, does not understand the multiphase biology of Cpn, although he tests for it if it's suspected, and the kind of treatment needed to get at it. This is not all his fault. The Vanderbilt work is not widely known. Part of this is due to the difficulty the Vanderbilt group had in getting anything published on thier findings. Their research was blocked by a "leading chlamydiologist" who sits on all the journal reviews for chlamydia and would not accept any methods not their own. Without journal publication, no one in medicine will know of the science and results of a combination protocol unless they are motivated to dig for it. And those who dig further and discover this approach (like Dr.s Wheldon and Powell for example) are seen as promoting a treatment strategy that has "no scientific acceptance." That's why it's such an important thing that the Vanderbilt Chlamydia Lab is back in business, so they can get a new round of research that, in toto, will have the weight to get published. Pray for it.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

> Pray for it.

And remember to write a check each month.  Better yet, if you have electronic bill pay at your bank, set up a recurring payment so that it's automatic. 

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zith (3 x week). Fourth pulse metronidazole completed 1/23/2008.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Hdwhit, Please excuse my misunderstanding and perhaps I can chalk it up to Tini pulse #4, however could you please elaborate regarding your response.  I completely do not understand your post.

Louise

CFS/ME.CPn positive.Bb positive.

Started 6/24/07WheldonCAP.Doxy, Roxi, Tini pulse #4 currently in progress.

Cholestyramine 1 packet at Bedtime  for Porphoria and die-off symptoms of Fatigue, Brainfog, mood.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

PLoS has a new journal, One, which is "high-volume" and publishes with very minimal review (which I think might be totally in-house?). It might be a useful ally if one had the misfortune to be repeatedly obstructed by hide-bound reviewers, a problem that more than a few researchers have encountered. I'm not sure exactly how One is perceived (one could look up the impact factor), but PLoS Biology is very highly regarded, and therefore the PLoS banner has some cachet.